How does ME/CFS or long COVID affect my child’s ability to attend school?
One of the key aspects of ME/CFS is a substantial reduction in function. This means the person with ME/CFS will not be able to do all of the things they did before they became unwell. It is likely that your child or young person will need adjustments at school to help them manage.
For some, only minor adjustments may be needed, such as rest breaks. For others, more significant adjustments may be needed, like limited school hours. There will be some for whom school may not be possible at all, but for them, remaining in contact with friends and the school system is important.
How much your child or young person can do will vary both within a day, and over time. All plans should be flexible and the child or young person must be believed when they say they are unable to do something. For example, they may have managed to get to school, but then feel a crash coming on and now need to come home. Pushing through is not advised.
Post-exertional malaise
The central feature of ME/CFS, and a common symptom of long COVID, is PEM. This is when symptoms get worse after physical or mental activity that was not a problem before your child or young person became unwell.
Some things to remember about PEM include that:
- PEM is not fatigue – it involves an increase in current symptoms or the addition of new symptoms. For example, your child or young person may feel like they have the flu, feel sick, have a headache, or experience muscle weakness
- PEM can be delayed, which means the impact of an activity, or number of activities, may not be seen at school, but at home, or not until the weekend
- Recovery from PEM can take a long time (a good sleep is not usually enough). It can take days, weeks or even longer to recover from PEM
- A student’s capacity will be better on days they are not experiencing PEM, and extremely limited on days that they are.
You can check out our short video about PEM on our PEM webpage.
Management of PEM
Think of your child or young person’s energy like a battery. It is never fully charged, and the charge runs out faster than normal. Managing PEM involves pacing activity to stay within their ‘energy limits’, to avoid running their battery flat.
The key management strategy for PEM is called pacing, which involves keeping activity within energy limits and frequent rest.
Research suggests that children and young people with ME/CFS are more likely to recover than those who develop the condition later in life. Pacing activity and not pushing past limits is crucial to increase the likelihood that your child or young person will recover.
Sometimes, even with pacing, students will be unable to manage a normal school day and should not be expected to.
Other common symptoms of ME/CFS and long COVID
As well as PEM, other symptoms can include [3]:
- Extreme fatigue – this is more than just being tired and may look like reduced stamina. It is not due to a lack of fitness or motivation
- Cognitive problems – problems with thinking, focus and memory
- Unrefreshing or disturbed sleep – waking up tired, trouble going to sleep, waking up frequently during the night, or needing to sleep during the day
- Sensitivity to light, smell, sound, temperature, foods or chemicals. You might not be affected by these, but your child or young person may find them very difficult
- General or local pain that can change
- Feeling light-headed or dizzy when sitting or standing (this is called orthostatic intolerance).